Commuting with Invisible Disability: An NYCSeatShare Idea

Posted on February 23, 2015

Update: The response to this post has been incredible. And for that, I thank both you, the reader and the staff of Medium for helping to spread the word about this idea. I just had a meeting with Commissioner Victor Calise at the Mayors Office for People with Disabilities (MOPD) and he loves the idea! Product designs are currently in the works!

Commuting with Invisible Disability

I am a 32 year old New Yorker who navigates the city with a MetroCard and a cane. My disabilities are sometimes visible and other times completely invisible. One blink and the way you perceive my abilities can drastically change. Upon boarding a packed subway, I recently asked for a seat reserved for persons with disabilities. The woman standing between me and the seat informed me that it was filled, something so clearly obvious it didn’t need to be stated. This created a highly unwanted situation where I had to vocalize that I was in fact disabled and did in fact need the seat I was requesting. She reacted by glancing down, discovering my cane, and apologizing, telling me she hadn’t seen it. And that’s when she graciously assisted me in requesting the seat she had previously stood in the way of.

When I had initially boarded that 2 train, I scanned the perimiter trying to find the most able bodied twenty-something man who would be kind enough to give up his seat. And he did so without asking any questions, because he saw my cane. He must have seen other things as well. I was an athletically dressed, otherwise healthy looking 32 year old who has previously been asked to offer up a seat when my cane was less visible. What if the man I had requested a seat from had a heart or lung or neurological disorder. What if he had just left work early, feeling ill? What if I hadn’t been using my cane? My odd gait cannot be detected when I am standing still. This is the conundrum of invisible disabilities. Things aren’t always as they seem.

So what options are afforded to people with invisible disabilities? There are some who will opt to travel with a device such as a cane, a walker or a wheelchair to create visibility, to assure their needs will be met. Others may begin to withdrawal, becoming invisible to the world, much like their disability. And some will just risk it. It meaning their safety and the safety of others by attempting to stand on public transportation or walk from the back of the parking lot. None of these options are ideal, but when you read the notice below, it shows how assistive devices speak for us in ways our voices can’t.

These notices were posted anonymously in a town in a Portland Oregon neighborhood in 2013.

My friend Kellen, a fellow ableist blogger from the Pacific Northwest recently relayed an interaction he had over a handicapped parking spot with a community watchdog in a letter to the editor.

“You don’t look very handicapped to me!” she yelled in a condescending tone. Her mind was made up before I even got out of the car. As soon as she saw my cane, the older lady continued with “Oh good, I’m glad that you are,” and without remorse explained that she does this all the time … and it’s for my own good.

She was glad. The full letter can be seen on his beautiful blog Wheels and Red.

So while I am someone who relies on and can only relay my experiences through public transportation, I want to acknowledge that this can and does happen in and with every single form of transportation. That being said, I wanted to hammer a quick point home to my fellow NYC commuters.

If you’re on the AC or 1 train and heading downtown, there’s a chance the person next to you just came from New York Presbyterian, Columbia. Pick any train heading from Columbus Circle (ACBD 1 NRW) and you have St. Lukes Roosevelt. The L Train? Beth Israel. Any train out of Grand Central (456 7 S Metro-North) could be someone coming from NYU. And if they’re on the train going the other direction? Perhaps they’re heading to. You cannot ride a train or a bus, and you cannot take a cab that will not eventually lead from or to one of the leading hospitals in the nation. Invisible Disabilities are around each and every one of us. All day. Every day. There’s a high chance you will go a lifetime without someone speaking up, but you won’t go a day without encountering someone who wishes they could. I want to change this. I want to do so in a demystifying and destigmatizing way. I just need some help. Here’s my idea.

The Idea: NYCSeatShare

Please forgive the drawing, I’m not the designer that I am seeking. But this is how the idea of NYCSeatShare came to be.

I have been trying to convince a friend to carry a collapsable cane in her bag. She has an invisible illness and frequently needs a seat. When she can’t get a seat, oftentimes during rush hour, she is too uncomfortable to ask. I felt she could use a collapsable cane in the most dire of circumstances to speak on her behalf. But that has not happened for a variety of reasons, all dealing with her pride and the stigma of assistive devices.

I then thought, what if she wore something beautiful that could be her voice. A badge, or a broach or a lapel pin seemed like the most obvious item. A badge grants authenticity, lapel pins and broaches are beautiful accessories. Someone with an invisible illness could put the badge on and take it off as their need arises. But when I realized my friend had no desire to wear her illness, I nixed the idea.

The Evolution of NYCSeatShare

The lightbulb moment came when it occurred to me that there actually should be an NYCSeatShare badge, but it shouldn’t be worn by those who need a seat. The NYCSeatShare badge should be worn by those who will gladly give their seat up. The badge serves as a promise that if someone needs and asks for a seat, they will be given one. No questions asked.

To be successful, the NYCSeatShare badge will still need to be covetable and beautiful so that SeatSharers will want to wear them. SeatSharers will take pride in the freedom they will be providing to those who need it most. And best of all, for the person with the invisible illness, the person feeling a little flu like, or the person who is struggling with pain, all it will take is a quick nod or a glance at the pin to get your needs met. This interaction could be done on a crowded subway without anyone else even taking notice, it may not even require an exchange of words.

The NYCSeatShare badge will be a token both of fashion and inclusive thought, of understanding. It doesn’t need to be large, but it must be universal in design so that a person can scan a train to see if someone is wearing it. Also it needs to look just as good on a cashmere coat or blazer as it does on a gym or school bag.

The logo will be reinforced through repetition. I imagine stickers on the back of handicapped seating and I dream of an MTA advertising campaign. But most importantly, the NYCSeatShare badge must be affordable. The beauty and message of the badge will make it a status symbol, the affordability will assure that the status isn’t one’s financial acuity but their willingness to give. Perhaps various designers could be given permission to use the logo on a variety of products.

So here’s what NYCSeatShare needs.

NYCSeatShare needs the support of local politicians. I’ll be reaching to the Mayors Office for People with Disabilities as well as Senator David Carlucci and Assemblywoman Sandy Galef who made New York State the first state to update the traditional handicapped sign with the more inspiring and inclusive Accessible Icon.

NYCSeatShare needs approval of the MTA.

NYCSeatShare needs the skills of an incredible designer. Where else is the NYCSeatShare logo and badge going to come from?

NYCSeatShare needs the backing of a local hospital (hopefully my beloved hospital). Both doctors and patients can help inform one another about the program.

NYCSeatShare would also benefit from the support of every affected Society, Association and Foundation. Some of the first that come to mind are the MS Society, the Invisible Disabilities Association, and American Heart and Lung Associations, and the Lupus and Arthritis Foundations, etc. Is it possible for a handful of organizations to band together to make this idea come to life?

I don’t expect anything to happen overnight, but I am dedicated and would love your support. I’ll be updating when and if there are updates. If you have thoughts, ideas or if you know really important people, you can reach me at thegirlwiththepurplecane [at] gmail.

What Others Are Saying

BeverlyFebruary 23, 2015 at 4:23 am

I absolutely love your idea. I love “invisible disability!” I am diabetic and have my moments when my blood sugar is so high I can barely move. I also have moments when my blood sugar is so low I can’t even take a drink of juice to help myself. Taking public transportation was always a depressing thought. I loved it when I finally got my driver license and a car and could do it myself. Several years later, I was the driver in a car accident with my husband and three children. My husband lost his life trying to get control of the situation. My blood sugar was at 21 when the paramedics got ther . I should have been in a coma. I totally understand invisible disability. I also totally understand the importance of being able to have a seat and the willingness people have to offer their seat to someone that needs it. I would give my seat up in a heartbeat and I have done so. I truly support your effort and would love to help in any way I can. I appreciate what you have started more than words can say! I wish you luck in your endeavor! Thank you!!!

Dammit, Elizabeth. This is brilliant. I honor and appreciate how proactive you are and how you seek a solution which will help a larger community.
I have been struggling with a cancer diagnosis for the last 5 years, and as it has been in remission twice and active now 3 times, I have been in and out of visibility depending on my abilities. I have been able enough to work and challenged enough to be unable to. With public transportation, which I do need to rely on frequently, I struggle with my own need to feel independence and feel weird about making a big deal about it, because it is exhausting to explain. Sometimes I push myself beyond where I should to avoid a confrontation in public, only to pay for it for days or weeks with side effects and symptoms from standing up for a 25-40 minute ride to the hospital or an appointment.
I am in my thirties and to the untrained eye just seem like an incredibly tiny younger person with a ton of clothes on. But I am 40 pounds smaller than my normal weight, I have had 4 surgeries and done chemo and radiation – This time, I am choosing to deal with my issues in a non-traditional manner and do not have obvious markers like a bald head or an assistive device. I have been admitted to the ER so many times this winter that my Dr. has decided I need to avoid public situations to protect my immunity, but if I do need to get to any acupuncture or other appointment to help me build wellness, I must wear a surgical mask. Since we do not use masks in the United States commonly as the culture in Japan does, people treat me rudely because they believe I am wearing the mask AS an infectious person rather than one who is in danger of being hospitalized by what is a simple cough or sneeze to an average person. It does not function as an assistive device would in this situation due to people’s lack of understanding. But I will try harder to see my way around this in a more 360 degree manner, to find solutions or ways to address these concerns that will make things better for others who struggle. I applaud you and am reinvigorated to try to figure out ways to implement things in this manner in my home state of Michigan,

TFL (London, UK transport) provide “baby on board” badges for pregnant women so they are more obvious as potentially needing a seat more than some other passengers. I think this idea would be a great alternative, as many women with the badges still won’t ask.
I’ve got a visible disability and often wish I could offer my seat, I’m also then grateful that my crutches do the talking for me, both guaranteeing me a seat and in explaining why I can’t offer it to others. I’ve only been disabled for a couple of years, and at first I really hated the crutches and I guess in a way they represented a loss of able privilege – even though I had disabled friends, it turned out I had more privilege than I realized! – so identifying those happy to help seems much nicer for all involved than labelling different groups who might need help. Plus, it works better for instances where you are able 99% of the time but you just hurt yourself and need a seat on the way to a clinic right now.
In an ideal world I could see this having some benefits, like maybe wearers get discounted tickets if they’re willing to stand that bit more frequently..?

I have an invisble disability unless I wear shorts (crushed and badltly mamed a damaged lower leg). In fact, I just bought a collasable cane today as I am going on an international flight where I’ve rquested wheel chair service as I am flying back into a Canadian winter climate. I do not want people looking at me and thinking she does not need wheel chair service. So I understand your point.

I have an invisible illness. I have many friends that do as well. This is always a struggle. How do we get people to recognize that people can be disabled even though you can’t see it? And how can we get services for those invisible illnesses?

Absolutely a brilliant idea but the sign looks a lot like the sign of the waffen ss during ww2. Maybe for people living in the U.S. it doesnt have that comparison but for a lot of people outside the U.S. It does.

I will share this idea, i think frequent travelers would come forward for this (even on the few buses we have here). But I cant share this page while the lure picture for this ad is a lady in a fur coat. I’m of the NO FUR generation. I can’t pretend it’s faux. It still turns my stomach seeing it. But once the picture is gone, share and share and share, I will.

What a great idea! I Have ideopathic small fiber neuropathy and I look “able bodied”. It often amazes me how even my best friends forget about my neurological disorder and ask me to do things that I have no capability of… Surfing, running, etc When you look “well” it is easy for others to forget. I

This is such a great post! I am like your friend, i don’t take the train that i have access to bcuz it is always full as I can’t stand for the length of my trips as well as do the walking i need to do when i get of the train, i have thought of getting a collapsible cane to take with me.

This is incredible! I’ve been trying to find a solution to this problem for some time now and my friends and I have found that even a cane doesn’t guarantee a seat. When and where will the badges be available?